My Life is a lot like The Eras Tour, but with Little Fires Everywhere
I spent a week speaking on stages while rallying against childhood blindness. This is what went down.
This update was written in stolen moments and never edited. Forgive me, I know not where to find the time.
There’s a part of the Taylor Swift Eras Tour where The Queen puts her arms together above her head and plunges into a hole in the stage floor. The last two weeks of my life have been kind of like that. I had two amazing opportunities to talk about our family’s story from big stages. When I got off the stage, I plunged headfirst into the hole of motherhood to find—unlike Taylor Swift’s setup—under my stage there’s a household set aflame by crappy customer service and eye emergencies.
We recently had to reschedule the twins’ ophthalmology visit because they had runny noses. I completely understand why they would ask us to postpone our visit. I, too, sat in that waiting room with immunocompromised infants, praying that the snotty-nosed tykes would keep their distance. What I don’t understand is why I would have to wait on hold for 32 minutes for someone to tell me not to come. But, what was truly infuriating was the woman on the other end of the line told me she didn’t have another appointment for my children for three months. THREE MONTHS.
In three months, my daughters will probably be reading short sentences. They will be swimming proficiently and doing basic arithmetic. Three months is a third of the way through a full-term pregnancy. Three months is enough time for a retina to detach and a child to go blind.
Retinopathy of prematurity (ROP) is an eye disease in which abnormal blood vessels grow from the retina. For the unversed and untraumatized, the retina is a light-sensitive layer of tissue at the back of our eyeballs. It senses light and converts the sights around us into electrical signals that go to our brains. This is how we see. When a baby has ROP, blood vessels can grow in the wrong direction. Those vessels are attached to the retina; their disorderly growth can pull the tissue off the back the eye. This is a retinal detachment. There’s no coming back from it.
When I tell you my four-year-olds understand eye health better than the woman who was supposed to be helping me schedule an appointment, it is not hyperbole. I explained my daughters’ ROP, high myopia, risk of retinal detachment, and blindness. She responded, “Sorry ma’am. That’s all I’ve got. Do you want me to go ahead and schedule that for you?”
I told her no. I told her I would find another doctor. With as little as she seemed to know about ophthalmology, I felt her snicker under her breath because she and I both knew there was not another doctor’s office equipped to care for my children within 100 miles of Orlando. I took her sneer as a dare.
Let me advise you not to challenge a mother who has survived chronic trauma. She will drive the hundred miles, and she will write about your gross disregard for the whole internet to read. (Please share this with all your friends who have small children!)
We saw a delightful ophthalmologist in Tampa. She runs her office in this civilized way where someone answers the phone when you call. And you can get an appointment within a week or two. This solved a lot of problems for us, but it created a new problem: where to get glasses for the twins. Our old ophthalmologist’s office has optics store inside. Our new ophthalmologist does not. And while we could always just go back to the old office just to buy glasses, I’d rather not put myself through the torture of having to wait on hold to make an appointment just to PICK UP GLASSES.
Between the twins’ and my first public appearance at the Abbott One Structural Heart Conference and our second public appearance at the groundbreaking for the Orlando Health Children’s Pavilion, I called a lot of optometrists to find out what kind of pediatric frames they carried and to inquire about whether or not they accepted insurance. (Would you believe I was quoted FOUR HUNDRED AND FIFTY DOLLARS for a single pair of glasses that my FOUR-YEAR-OLD will be wearing on her face while she dives headfirst off the couch into a poorly assembled pillow pit?)
This is going to come as a huge shock to anyone who has ever dealt with the United States healthcare system, but only one of the five offices I called answered the phone. That’s the office I went with.
I was going to go yesterday, after our second public appearance, but on Wednesday afternoon, Vivienne dove off the couch and cracked her glasses. I put an old pair—with an outdated prescription—on her, and loaded my daughters into the car to go purchase new glasses.
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